RARE Daily

Rare Leader: Benjamin Yerxa, CEO, Foundation Fighting Blindness

October 7, 2021

The Basics
Name:  Benjamin Yerxa

Title: CEO

Organization: Foundation Fighting Blindness

Social Media Links:

Disease focus: The foundation focuses on retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases.

Headquarters: Columbia, Maryland

How did you become involved in rare disease: Early in my career, I worked on a project for cystic fibrosis. It was technology that spun out of UNC Chapel Hill. I co-invented the compound. It went into phase 3 testing. I was the lead chemist on the project. It had one positive trial, one negative trial, so the program didn’t make it.

Previous career: Led an ocular drug delivery company called Envisia Therapeutics. Currently also serve as the CEO of the Retinal Degeneration Fund, which invests in companies developing therapies for inherited retinal disease.

Education: B.A in chemistry from the University of California, San Diego; Ph.D. in organic chemistry from the University of California, Irvine

The Organization
Organization’s mission: It’s driving the research to provide for preventions, treatments, and cures for inherited retinal diseases and dry AMD, which is essentially the entire spectrum of retinal degenerative diseases.

Organization’s strategy: We identify the key gaps in the field, in the science, and then we fund the top researchers at the top institutions, and we hold them to milestones. We don’t just fund researchers and hope they write a paper. We expect results.

Funding strategy: It’s major gifts and events. We’re rare disease, so it’s harder to raise money with events because it’s such a small community. We do have chapters in multiple states. We rallied the community at the ground level. We look for philanthropy and major donors to do the rest, and some come from foundations as well.

What’s changing at your organization in the next year: One of the big changes is we’re reinvigorating our chapters to really expand our reach. We have to have people on the ground in the communities to create relationships and that’s really the best way for us to serve our constituents. We have been hiring. Despite the pandemic, we’ve actually been growing and putting more resources of people and money into the chapter so that we can serve our constituents better.

Management Style
Management philosophy: I’m demanding but laid back at the same time. I have high expectations, but I give people a long leash in order to get the job done.

Guiding principles for running an effective organization: Always be open, honest, and respectful. Hiring and retaining the key talent is important. I do that based on their drive and passion, and raw talent. I recruit based on those aspects and train on the technical part. Finally, it’s just staying focused on the mission. That’s our north star.

Best way to keep your organization relevant: Putting our dollars on the most cutting-edge technology that have the best chance of creating treatments and cures is important. We stay relevant by staying on top of the science and funding, the top stuff like gene editing and things like that. I’d say that’s probably the biggest thing.

Why people like working with you: I’ve got ideas and I like to get stuff done. I like to put out big ideas and tackle them.

Mentor: Christy Shaffer at Inspire who was my boss for ten years. She’s now a partner at Hatteras Venture Partners and doing great, but she allowed me to take on big problems, even if they were not in an area of my expertise. She also gave me a lot of opportunities to go out externally and learn about leadership and do things to make myself better.

On the Job
What inspires you: For me, it’s hearing stories from either researchers or doctors in the field who treated a blind kid and restored their vision with a gene therapy that we help fund in the past. Hearing stories of researchers getting donations from constituents, or a box of cookies to encourage them to work harder. It’s stories like that that put the fire in our belly.

What makes you hopeful: The pace at which the science is moving. To see what’s possible when you know what is going on genetically, the power of these new therapies. We’re allowed to say the word cure now.

Best organization decision: To bring on a chief operating officer. That has allowed me to take on more strategic things myself, more time to create the RD Fund, and things like that. From a teamwork and operational perspective, it was key to have that a person by my side to help make it happen.

Hardest lesson learned: It’s probably around creating change. When I can see that things need to change and I have a plan, even if it’s a fuzzy one, to do it. The implementation and getting to the result of the change desired seems to take about twice as long and take twice as much effort as I think it should. I need to remember that.

Toughest organization decision: A reorganization we did early on when I joined. It’s always a tough decision when you’re dealing with people and their livelihoods. We take that seriously, but we needed to retool to position the foundation for the future. We had to do a pretty sweeping change of the organization to do that.

Biggest missed opportunity: We had an opportunity to invest in Spark Therapeutics. We just weren’t set up for it at the time. Also, this is our 50th anniversary year. We were supposed to have a big live celebration this fall commemorating our 50th anniversary. We had a huge event all lined up, but COVID dashed those dreams. That’s something I’m bummed about.

Like best about the job: I love working with my team. We have a great team. It’s dedicated and smart and fun to work with. The fact that we get to band together as an extended team to tackle some of the biggest problems in ophthalmology today, it’s rewarding. It makes it fun to come into work.

Like least about the job: When you’re CEO for a national charity, sometimes it feels like everyone wants a piece of me. I always want to help. I tend to over-commit myself on a regular basis. Sometimes that’s not the best thing to do for me as a person, but it’s the way I’m wired.

Pet peeve: I don’t like whiners. Anyone who whines or complains about something and doesn’t have any kind of solution or idea to combat it—that just bugs me.

First choice for a new career: Professor of entrepreneurship. I do enjoy teaching. I’ve learned a few tricks along the way, and I would love to be able to share that.

Personal Taste
Most influential book: Ender’s Game, by Orson Scott Card. It’s a story of fictional leadership. It’s one of the only books I’ve read more than once.

Favorite movie: The Italian Job, the newer version. It’s one of my favorite movies and one of my family’s favorite movies

Favorite music
: ‘80s alternative is what I grew up with and whatever its modern equivalent would be.

Favorite food: Mexican food–enchiladas

Guilty pleasure: Watching bad TV

Favorite way to spend free time: I like to hike and cook.

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